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Top 5 Twitter Patient Leaders to Watch

From 140 characters to a seemingly massive 280-character count, Twitter is ever-changing and ever-growing. Check out these stats:

  • There are 500 million tweets sent per day and 330 million monthly active users.
  • Currently valued at $16 billion, Twitter’s revenue is growing. Q3 2016 revenue was $616 million, compared to Q3 revenue of 2015 which was $569 million – up 61% year-over-year, and above the previously forecast range of $470 million to $485 million.
  • Advertising revenue totaled $545 million (US: $374 million, International: $242 million), an increase of 6% year-over-year.

Millions of tweets are being sent everyday


Patients, caregivers, and Patient Leaders are no strangers to Twitter. According to a Behavioral Intent Survey conducted by WEGO Health, around 45% of patients use Twitter to share health information with their communities. You can download the full report by clicking here.

One way that Patient Leaders across all condition areas engage through Twitter is by facilitating and/or participating in Twitter chats. Actually, Twitter chats are a great way to connect people on a global scale by simply including a predetermined hashtag in a tweet and then searching for that hashtag on Twitter to see all the tweets with that hashtag.

WEGO Health hosts a Twitter chat using the hashtag #WEGOHealthChat each month on topics ranging from healthcare and blogging techniques to condition specific topics, and more. In 2017, there were 1,169 participants on the chat which brought in over 83.8 million impressions.

From participating in and hosting Twitter chats, to sharing health resources to their followers, Patient Leaders are certainly not missing an opportunity to use this social media channel to help extend their advocacy efforts.


2017 WEGO Health Awards – Best in Show: Twitter

During our 5th annual WEGO Health Awards, five finalists were selected for “Best in Show – Twitter.”  It’s not easy creating easily digestible thoughts about health stories and research with a character limit, but these leaders do it, and they do it well.

Whether they’ve created their own Twitter chat, participate actively in others’ chats, push out words of encouragement, or are using the platform for advocacy and support – they are the model of Twitter for #health.

We reached out to the finalists to hear how Twitter has played a role in the sharing of resources and information amongst their communities. Here are the top five Twitter Patient Leaders and what they had to say:


Top Twitter Patient Leader #1: Rick Banas

Finalist Rick Banas, a Senior Living Patient Leader, believes that Twitter plays a wonderful role in our effort to reach and build relationships with older adults and their families. Rick shares with us that,

Twitter also provides the opportunity to create an understanding that chronic health problems and frailty are not normal consequences of aging and shine a spotlight on the need for, and benefits of, affordable assisted living, especially in light of the coming tsunami of Baby Boomers. The focus of healthcare and senior living should be on adding more life to years, not just more years to life.”

Rick Banas, Best in Show -Twitter Finalist @rickbanas


Top Twitter Patient Leader #2: Randy Patrick

Our second finalist, and category winner, is Randy Patrick, an MS Patient Leader. For Randy, Twitter plays a huge role in sharing resources and information among the MS community. Randy’s thoughts on the use of Twitter are that,

It is a quick and easy way to reach your audience.  Social media has boomed recently among the millennial generation, and with MS commonly being diagnosed between the ages of 20 and 40, Twitter fits right in to that.  Information can be posted and shared immediately, there are Twitter chats that bring the community together, and in return can bring a sense of comfort knowing you aren’t battling things alone.”

By the way, Randy hosts a weekly Twitter chat! So, make sure to follow along using the hashtag #ChatMS.

Randy Patrick, Best in Show – Twitter Winner @muststopms


Top Twitter Patient Leader #3: International Pain Foundation

The International Pain Foundation, an incredible foundation as well as one of the finalists, takes full advantage of what Twitter has to offer. Barby Ingle, The International Pain Foundation Founder, states that,

In a nutshell, Twitter has an important role in raising awareness, sharing resources, educating patients, and providing another platform to engage the pain community – and every opportunity to do that is worth exploring.”

The International Pain Foundation, Best in Show – Twitter Finalist @powerofpain


Top Twitter Patient Leader #4: Alison Rothbaum

The fourth finalist is Alison Rothbaum, founder of Empowering Patients, LLC. For Alison, Twitter has become her major go-to platform for her advocacy efforts and social engagement. Alison provides these thoughts on Twitter:

The platform allows for fast-paced interaction with worldwide leading specialists in disease fields. From these interactions, communications with advocate/activist peers, following hashtags of conferences and chats, and engaging fellow communities, I’m able to pass along information as it’s publicly released. 

There’s disease related conferences across the globe that I can follow along and take part in, where I wouldn’t have been able to before Twitter.”

Alison Rothbaum, Best in Show – Twitter Finalist @empoweringpts9


Top Twitter Patient Leader #5: Tom Kindlon

And, last but most certainly not least, Best in Show – Twitter finalist Tom Kindlon, a Patient Leader for Myalgic Encephalomyelitis (M.E.), believes Twitter plays a big role in the sharing of information and resources in his disease community. Here’s what Tom has to say about the use of Twitter in his advocacy work:

News often seems to “break” there and then gets dispersed elsewhere. Physical and mental energy is at a premium with the illness, but Twitter’s short format means there is no requirement to write long posts… Twitter has been a big factor in some crowdfunding campaigns connected with the condition, along with helping with fundraising for non-profits. It’s a great tool to highlight appeals for research volunteers or if a journalist is looking to talk to a patient or caregiver. People have shared photos, memes, and text to raise awareness and understanding: it even allowed people to protest virtually for the #millionsmissing campaigns.

There has been some controversial research in the field which has sometimes led to unfortunate media items, and Twitter had facilitated the dispersal of critiques of such research and media coverage. A lot of the people with the illness, including myself, have little or no energy to attend meetings for information or support (some people are homebound or bedbound and many others ration trips out) and Twitter is great for us.”

Tom Kindlon, Best in Show – Twitter Finalist @tomkindlon


In Closing

With a limited number of characters, these Patient Leaders have been able to advocate, raise awareness, connect with their communities, fundraise, and beyond on Twitter. This social media channel provides another outlet for patients to turn to in order to find information from Patient Leaders that they trust and connect to.

Through Twitter chats, daily interactions, retweets, and favorites, information on healthcare is right at the fingertips of millions of daily users. So, be sure to follow these fierce Twitter Patient Leaders as they lead advocacy and healthcare movements among their online community groups.

Caitlyn has been a part of the WEGO Health Sponsor Programs team since 2015. As the day-to-day contact for pharmaceutical and healthcare company sponsors, Caitlyn manages the creation and launch of social media initiatives that work to bridge the gap between sponsors and the WEGO Health Network of online patient leaders. Often bridging that gap means working directly with patient leaders to create sponsored material that better represents the patient voice.

Caitlyn lives in Providence, Rhode Island where she actively wears her New York Yankees gear out of respect for her hometown in upstate New York. In her spare time, Caitlyn plays tennis and explores the restaurant scene to uphold her “Foodie” title.

  • Sleepyblondie

    Tom Kindlon has done a lot to help the patient community. Glad to see him mentioned here

  • Kevin Mooney

    CONGRATULATIONS! International Pain Foundation in capturing 3rd. Place best in show, @powerofpain Thank you!! A big Thank you also to our champion and hero, Ms. Barby Ingle in advocating for us the chronic, intractable pain patients, giving us a voice and encouragement in the fight

  • Micki Hogan

    Congrats Barby n Ken,,,,let me say that again,,,,congratulations!

  • Sten Helmfrid

    Tom Kindlon’s long term commitment to ME/CFS advocacy has been extremely valuable. Thank you, Tom, for all hard work.


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